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Topic: PATHOLOGY REPORT - Hoping to find help in deciphering this

Forum: ILC (Invasive Lobular Carcinoma) — Just diagnosed, in treatment, or finished treatment for ILC.

Posted on: Jun 19, 2018 05:34PM

gwydiana wrote:

I was just given my pathology report, which I insisted on them giving me, even though my appointment with my Oncologist isn't until Thursday.

It's really bad :( All 5 of the lymph nodes excised, including the Sentinel, came back positive for metastasis. They are determining my stage to be IIIA but it may be Stage 4 -- still need more tests I guess?

The tumor was 14 CM with ill-defined margins. Still trying to figure out what that means

Histologic Type: Invasive Pleomorphic Lobular Carcinoma
Histologic Grade - Intermediate Grade

Glandular: 3
Nuclear Pleomorphism: 2
Mitotic Rate: 1
Overall Grade: 2/3
Tumor Focality: Unifocal
Lobular Neoplasia: Present, Pleomorphic Type and Classic Type
Invasive Carcinoma Margins: Medial Margin and Superficial/Superior Margin are POSITIVE for Invasive Lobular Carcinoma
Pathologic Stage Classification: pt3N2a (Stage: IIIA)

Multiple Foci of Microscopic Invasive Lobular Carcinoma


Can anybody please help me decipher this?
Is this a death sentence?

Pleomorphic Invasive Lobular Carcinoma Dx 4/6/2018, ILC, Right, 6cm+, Stage IIIA, Grade 2, 5/5 nodes, ER+/PR+, HER2- Hormonal Therapy 4/25/2018 Femara (letrozole)
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Jun 19, 2018 05:59PM Meow13 wrote:

Wow, if you were grade 3 I would say chemo but grade 1 and mitotic score 1 hmmm. It is a tough call. I think letrozole is definitely good in your case.

No it is not a death sentence but you need to make sure you keep at it. Might be fighting this for years. It is slow growing cancer so you can take comfort in that.

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Jun 19, 2018 07:02PM gwydiana wrote:

Meow, thank you so much for the response! If this is a slow growing cancer, I'm astounded at the fact that it's a 6"+ tumor and went unfound during my last mammo at the end of February, 2018. I had to push for an ultrasound and biopsy as they declared me clean and told me to come back in 2 years.

This was a massive tumor and he didn't get it all :(

Pleomorphic Invasive Lobular Carcinoma Dx 4/6/2018, ILC, Right, 6cm+, Stage IIIA, Grade 2, 5/5 nodes, ER+/PR+, HER2- Hormonal Therapy 4/25/2018 Femara (letrozole)
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Jun 19, 2018 09:06PM - edited Jun 19, 2018 09:06PM by Meow13

It was massive, scary to think they missed it. Anyway, good luck to you.

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Jun 19, 2018 09:58PM Optimist52 wrote:

I see that you are actually Grade 2 not Grade 1. Mitotic score 1 is good, means it's not fast-growing although this must seem confusing with the size involved. ILC is often found at a later stage because of its ability to 'hide' in mammograms and ultrasounds.

I also have pleomorphic type, it's not necessarily worse than classic ILC. Best wishes.

Second diagnosis PILC - Oncotype 22, isolated tumour cells in 2 nodes Dx 10/2003, ILC, Left, 1cm, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 10/23/2003 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 1/2/2004 3DCRT: Breast Hormonal Therapy 3/3/2004 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 6/23/2015, ILC, Left, 4cm, Stage IIA, Grade 2, 0/9 nodes, ER+/PR+, HER2- Surgery 7/6/2015 Lymph node removal: Underarm/Axillary; Mastectomy: Left Hormonal Therapy 8/13/2015 Femara (letrozole)
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Jun 19, 2018 10:08PM gwydiana wrote:

Optimist52, thank you so much! I'm still very confused on all the details and am frantically trying to decipher this pathology report.

Pleomorphic Invasive Lobular Carcinoma Dx 4/6/2018, ILC, Right, 6cm+, Stage IIIA, Grade 2, 5/5 nodes, ER+/PR+, HER2- Hormonal Therapy 4/25/2018 Femara (letrozole)
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Jun 19, 2018 10:59PM Meow13 wrote:

Many cancer tumors have ill defined margins, it is just a descriptive term used with the 14cm size.

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Jun 20, 2018 01:03AM Beatmon wrote:

copy to djmammo thread. He is very helpful

Dx 7/27/2012, IDC, <1cm, Stage IA, Grade 3, 0/1 nodes, ER-/PR-, HER2+ Surgery 8/8/2012 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right Surgery 11/30/2013 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 6/30/2014 Reconstruction (left); Reconstruction (right) Dx 8/9/2014, IDC, Both breasts, Stage IV, metastasized to lungs, Grade 3, ER-/PR-, HER2+ Targeted Therapy 8/26/2014 Herceptin (trastuzumab) Targeted Therapy 8/26/2014 Perjeta (pertuzumab) Chemotherapy 8/26/2014 Taxotere (docetaxel)
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Jun 23, 2018 12:23AM Sabrina46 wrote:

Hello Gwydiana, I am so sorry to hear of this. Scary to THINK this was allowed to grow so large. I believe they can help you, as they have everyone else.

There is something about this tumor, some of them can look like regular tissue, dangerously freaky to think this is possible. Please don't fret your report, research what you CAN and prepare to discuss concerns with your Breast Doc/Med Onc.

I realize there is not loads of info in ILC, like you I am scared and my mind is racing

We will be fine, allowed to freak out....write down all your questions and prepare to discuss it. I am sending you well wishes and a great big hug!

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Jun 23, 2018 12:48AM Meow13 wrote:

Does anyone know if we are getting away from classifying where the tumor originates like in the lobes vs ducts and instead classify on the characteristics of the tumor? I had 1 ILC and 1 IDC with lobular features.

My pathology report was pretty extensive with descriptive terms and measurements. I understand ILC is typically very spider like and can be elusive and present over larger areas. My report describes distinct tumors surrounded by normal tissue. So maybe my cancer is ILC because it was formed in the lobes. Perhaps my IDC tumor with lobular features fits the typical ILC classification.

Either way my oncologist seems unconcerned with the type and more concerned about no progesterone receptors and high oncodx score. Probably worried about how well the hormone therapy will protect me.

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Jun 23, 2018 01:14AM - edited Jun 23, 2018 01:32AM by Meow13

I have my path report out. My tumors ILC and IDC were determined by by the E cadherin bio markers. My ilc tumor was classified that because lobular cancer presents as negative on E cadherin. My idc tumor was classified based on highly positive E cadherin. My biposy had both tumors as ILC.

Interesting stuff.

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Jun 23, 2018 01:14AM ShetlandPony wrote:

Hello, gwydiana. This is treatable. It can be tricky for us here to walk the line between our desire to be helpful and giving an opinion that only your oncologist can give. With the positive nodes, please don't be surprised if your oncologist says chemo is on the table. That word “invasive" sounds awful, I know, but it just means that the cancer moved out of the lobule and into the surrounding tissue, which is the case with all stages except stage zero (in situ). Grade 2 is better than grade 3. The note about positive margins means that on two of the edges of the tissue removed during the lumpectomy, there were cancer cells. This is not uncommon, and usually they recommend re-excision. They go back using the same incision and take out a little more, so the margins will be clean. They may order a bone scan, CT scan, and/or PET scan to make sure there is no cancer in your lungs, liver, bones etc. before you start treatment. I hope this helps.

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
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Jun 23, 2018 01:30AM Meow13 wrote:

Here is a really good description of nottingham scores

http://tvmouse.ucdavis.edu/bcancercd/311/grading_d...

I had to note one source seems to point to mitotic score to be the most important indicator.


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Jul 5, 2018 08:36PM gwydiana wrote:

Thank you ALL for the great help and support. I'm so very scared. I have a PET scan scheduled for this Saturday and double mastectomy scheduled for 7/18/18.

Pleomorphic Invasive Lobular Carcinoma Dx 4/6/2018, ILC, Right, 6cm+, Stage IIIA, Grade 2, 5/5 nodes, ER+/PR+, HER2- Hormonal Therapy 4/25/2018 Femara (letrozole)
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Jul 29, 2018 05:06AM dakrock wrote:

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A few seconds ago dakrock wrote:



I don't really understand what all these numbers mean.  Can someone help me please.  I have ILC and surgery on February, 24, 2018.  Mastectomy right breast with immediate nipple sparing reconstruction.   NO node involvement but here were my numbers before surgery

Focal asymmetry is identified, Architectural distortion entire dimension measures 2.9 cm

ER+PR >90%/variable, focally >90%

HER2/Negative

KI-67 25-35% 

Does this seem like a cancer that will spread?

Thanks, I need all the help I can get.


Bonnie Dx 12/4/2017, ILC, Right, 2cm, Stage IA, Grade 2, ER+/PR+, HER2- Hormonal Therapy 12/5/2017 Femara (letrozole) Surgery 2/23/2018 Mastectomy: Right; Reconstruction (right): Nipple reconstruction, Saline implant Hormonal Therapy Arimidex (anastrozole)
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Jul 29, 2018 06:21AM Georgia1 wrote:

Hi Dakrok. Sounds like those are pre-surgery biopsy stats. Do you have the post-surgery pathology report? That is more definitive. Risk of cancer spreading depends on several things, including size, lymph node involvement (which seems like you do not have) and whether there was more than one tumor. With a high ER percentage your risk can be reduced by taking Tamoxifen or an AI, and from your profile it looks like you're on an AI. One more question: did you get an Oncotype DX test? That Ki67 number is a bit high but can't be relied on as a sole marker.

Cancer touched my breast so I kicked its ass. Dx 9/3/2017, ILC/IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Dx 10/10/2017, LCIS, Right, 0/1 nodes Surgery 10/10/2017 Lumpectomy; Lymph node removal: Right, Sentinel Radiation Therapy 11/27/2017 Whole-breast: Breast Hormonal Therapy 1/2/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 29, 2018 10:26AM dakrock wrote:

Hi Georgia 1

No I have not had that test.   What is it?   

Bonnie Dx 12/4/2017, ILC, Right, 2cm, Stage IA, Grade 2, ER+/PR+, HER2- Hormonal Therapy 12/5/2017 Femara (letrozole) Surgery 2/23/2018 Mastectomy: Right; Reconstruction (right): Nipple reconstruction, Saline implant Hormonal Therapy Arimidex (anastrozole)
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Jul 29, 2018 10:59AM Georgia1 wrote:

It's a genomic test that can be run on the tissue you had removed, and it can predict risk of recurrence. It can also be used to decide whether to have chemo, but sounds like you don't need that. You can just ask your surgeon or MO to order it; more info. here:


https://www.breastcancer.org/symptoms/testing/type...


Cancer touched my breast so I kicked its ass. Dx 9/3/2017, ILC/IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Dx 10/10/2017, LCIS, Right, 0/1 nodes Surgery 10/10/2017 Lumpectomy; Lymph node removal: Right, Sentinel Radiation Therapy 11/27/2017 Whole-breast: Breast Hormonal Therapy 1/2/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 29, 2018 11:17AM carmstr835 wrote:

I know I am not a Dr. and my opinion is just that, an opinion. I would be concerned about the pathology from the surgical specimen if you were on hormone therapy prior to surgery. I know I had drastically different pathology from biopsy to the surgical pathology. With the arimidex everything was lower including the KI-67, it went from high 20% down to less than 1%. I was also progesterone + with the biopsy, but progesterone negative with the surgical pathology. I am concerned about that difference; if they send in your post surgical specimens tainted with a hormone blocker to the onca score people and it comes back as a lower proliferation rate, that might not be accurate and will also assume further benefit from hormone therapy you were already getting. I ignored my onca score for that reason, my MO did not agree with me, however. I opted for chemo regardless of my onca score (17&19) and mammaprint (low Luminal A) both were post surgical.

Dx 3/1/2017, DCIS/IDC, Both breasts, 1cm, Stage IIB, Grade 2, 2/17 nodes, ER+/PR-, HER2+ (FISH) Hormonal Therapy 3/21/2017 Arimidex (anastrozole) Surgery 3/26/2017 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 5/16/2017 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Targeted Therapy 6/26/2017 Perjeta (pertuzumab) Targeted Therapy 6/26/2017 Herceptin (trastuzumab) Chemotherapy 6/26/2017 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 9/10/2017 Breast, Lymph nodes, Chest wall Surgery 7/9/2018 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery 10/15/2018 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Surgery 9/17/2019 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Targeted Therapy Nerlynx
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Jul 29, 2018 04:30PM dakrock wrote:

Thank you I will do that.

Bonnie Dx 12/4/2017, ILC, Right, 2cm, Stage IA, Grade 2, ER+/PR+, HER2- Hormonal Therapy 12/5/2017 Femara (letrozole) Surgery 2/23/2018 Mastectomy: Right; Reconstruction (right): Nipple reconstruction, Saline implant Hormonal Therapy Arimidex (anastrozole)
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Jul 29, 2018 04:41PM dakrock wrote:

I had been on estrogen since I was 29 and was still taking it when they found out I had breast cancer at age 72.  My doctor said stop immediately because I was feeding the cancer.   I stopped Estrogen in December and went on Letrozole and continue to take Letrozole.  I had my surgery on February 23, 2018 and the doctor said it went from the high score of 25-35 - to below 5.   I guess I don't understand about the test.  I would think it would show really low since my breast was removed and that was where the cancer was.  Are they supposed to check that KI-67 test frequently?   I am so lost in all these tests and decisions.  I am supposed to see an Endocrinologist on Tuesday morning as advised by my primary care doctor.  I am so confused.  I'm going just because he advised it but I am not taking any more medicine.   Enough geez.

Bonnie Dx 12/4/2017, ILC, Right, 2cm, Stage IA, Grade 2, ER+/PR+, HER2- Hormonal Therapy 12/5/2017 Femara (letrozole) Surgery 2/23/2018 Mastectomy: Right; Reconstruction (right): Nipple reconstruction, Saline implant Hormonal Therapy Arimidex (anastrozole)
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Jul 29, 2018 04:47PM dakrock wrote:

Carmstr835

It does make sense what you are saying.   I had been taking Letrozole since December 2017 and my surgery wasn't until the very end of February 2018.  I'm sure the letrozole had certainly changed those readings.   It all becomes overwhelming.    I guess we all want the same answer what is the chances it will come back????   

Bonnie Dx 12/4/2017, ILC, Right, 2cm, Stage IA, Grade 2, ER+/PR+, HER2- Hormonal Therapy 12/5/2017 Femara (letrozole) Surgery 2/23/2018 Mastectomy: Right; Reconstruction (right): Nipple reconstruction, Saline implant Hormonal Therapy Arimidex (anastrozole)
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Jul 29, 2018 05:11PM Georgia1 wrote:

Hi again. The Ki-67 is a test run on your tumor, and it is intended to predict how fast the cells are multiplying: a rough gauge of recurrence risk. But it's a fairly unreliable test; results vary from lab to lab and almost molecule to molecule in the tested sample. So most doctors now prefer the Oncotype DX test; Ki-67 is one factor in it but not the main one.

I think you have a good list of questions for your oncologist going on another thread. One to add is: would the Oncotype DX or Mammaptint test give me more information?

Cancer touched my breast so I kicked its ass. Dx 9/3/2017, ILC/IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Dx 10/10/2017, LCIS, Right, 0/1 nodes Surgery 10/10/2017 Lumpectomy; Lymph node removal: Right, Sentinel Radiation Therapy 11/27/2017 Whole-breast: Breast Hormonal Therapy 1/2/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)

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